Sarcoma: what it is, symptoms, diagnosis and treatment

Cancer Research UK describes soft tissue sarcomas as cancers that develop in the connective and supporting tissues of the body: fat, muscle, blood vessels, deep skin tissues, nerves, tendons and ligaments, and the tissues around joints. Bone is also a supporting tissue, and cancers that start in bone are called bone sarcomas or primary bone cancer. Sarcoma UK groups the two together under the single word sarcoma.

Because connective tissue is found everywhere, a soft tissue sarcoma can start almost anywhere in the body. The type depends on the kind of cell the cancer began in, and each type has its own behaviour, risks and outlook. That variety is why a precise diagnosis from a specialist pathologist matters so much.

In their early stages, Cancer Research UK says, soft tissue sarcomas do not usually cause symptoms. When they do, the main signs are a lump that is painless at first, a lump that increases in size, and pain or soreness as it grows and presses on nerves and muscles. Sarcoma UK says sarcomas are usually found by a person noticing a lump on a leg, arm or trunk.

Bone sarcoma tends to announce itself differently. Sarcoma UK lists swelling, tenderness or pain in a bone that can be worse at night, and Cancer Research UK says pain, swelling and problems moving around are the most common symptoms. Sarcoma UK also lists stomach pain, nausea, loss of appetite, early fullness and blood in poo or vomit for sarcomas in the abdomen.

• A lump that is getting bigger, or that has changed in feel or shape.

• A lump bigger than about 5 cm, or one that lies deep under the skin.

• A lump that is painful, or one that has returned after earlier surgery.

• Bone pain or swelling, particularly pain that is worse at night.

Cancer Research UK says you should see your doctor if you have an unexplained lump. It stresses that many people get lumps and bumps and most of them are not cancer, but that it is best to get one checked. It adds that soft tissue sarcoma is rare, so it is much more likely that something else is causing your symptoms.

Because sarcomas can grow anywhere, other symptoms depend on where the cancer is, and Cancer Research UK says to see your doctor if you notice anything that is not normal for you. Sarcoma UK suggests that if you have a lump, you keep track of any changes so that you can keep your GP informed.

Cancer Research UK says you usually start by seeing your GP, who will examine you and may refer you for tests or to a specialist, and that the tests you might have include an ultrasound scan and a biopsy, which is a sample of tissue. Sarcoma UK describes a clinical examination of any lumps, a scan to take pictures of the inside of your body, and a biopsy to test a tumour tissue sample, and says genomic testing may be recommended in some cases.

Sarcoma UK says sarcomas are usually found when a lump appears on the leg, arm or trunk, although they can also be found while investigating other symptoms or during a routine operation. It stresses that the earlier a sarcoma is diagnosed the better the chances of successful treatment.

Finding out the stage and grade of a sarcoma means your doctor can advise on the best treatment for you. Staging describes how big the cancer is and whether it has spread, and grading describes how abnormal the cells look under a microscope.

Cancer Research UK says treatment depends on what type of soft tissue sarcoma you have, its size and whether it has spread. The main treatment is surgery. Radiotherapy, which uses high-energy X-rays to destroy cancer cells, may also be used, you might have chemotherapy as part of your treatment, and targeted cancer drugs are another option. Sarcoma UK likewise says surgery is often the first treatment, and some people also have chemotherapy or radiotherapy depending on their individual circumstances.

Anyone who has sarcoma or a suspected sarcoma should be seen at a sarcoma specialist centre, according to Sarcoma UK. After treatment for soft tissue sarcoma, Cancer Research UK says you will have regular follow-up appointments.

Sarcoma UK says it can affect anyone of any age. It is the third most common cancer in children, but it is more common in middle-aged or older people. Cancer Research UK adds that, compared with most cancers, soft tissue sarcoma is also relatively common in younger people, and notes that around 650 people a year in the UK are diagnosed with primary bone cancer, which is more common in older children and teenagers and then again in older people.

For most people no cause is found. Sarcoma UK lists age, some rare genetic conditions (it names neurofibromatosis and Li-Fraumeni syndrome), very occasionally earlier radiotherapy for another cancer, exposure to certain chemicals, and bone conditions such as Paget's disease. It states there is currently no evidence that injuries cause sarcoma; an injury can simply draw attention to a lump that was already there.

Sarcoma UK says sarcoma can affect anyone of any age, and that it is the third most common cancer in children, although it is more common in middle-aged or elderly people. Cancer Research UK says primary bone cancer is, unusually for cancer, more common in older children and teenagers, and then becomes more common again in older people.

Cancer Research UK also notes that, compared with most other cancer types, soft tissue sarcoma is quite common in younger people. Sarcoma UK provides information on treating sarcoma in children, teenagers and young people, and says that anyone with a suspected sarcoma should be seen at a sarcoma specialist centre.

Cancer Research UK explains that if a soft tissue sarcoma is not treated, its cells keep dividing and the lump grows, and cells can break away and travel in the blood to form new areas of sarcoma, called secondary cancers or metastases. Sarcomas most commonly spread to the lungs, and sometimes to the bones. For bone cancer, cells usually spread to the lungs or other bones.

The sources used here give no single outlook figure, because there are many different types of soft tissue sarcoma with different behaviours, risks and outlooks. Your own specialist team is the right source for what the picture looks like for your type and stage.

On the NHS the usual route starts with a GP, who examines you and can refer you for tests or to a specialist. Cancer Research UK says a GP should arrange for you to have a test or see a specialist if you have symptoms that could be due to a soft tissue sarcoma. Cancer Research UK says the tests include an ultrasound scan and a biopsy.

Sarcoma UK says that a referral to a specialist sarcoma team is important to get the right diagnosis, and that anyone who has sarcoma or a suspected sarcoma should be seen at a sarcoma specialist centre. Private scans and consultations are available, but the diagnosis still depends on a biopsy and specialist assessment, and treatment is delivered at specialist sarcoma services, so ask where your care will be planned.

Sarcoma UK runs a support line and signposts support groups across the UK, and Cancer Research UK says it is common to struggle with mental health when you have cancer or care for someone with it. If you have a lump, Sarcoma UK suggests tracking any changes so that you can keep your GP informed.